#1
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I am having a problem with my sons occuptional therapist. About a yer ago he updated the chair we had at home for a more agressive therapy onw. When in it we experienced choking and all sorts. We went to the Bobath centre in London where the OT there said, get him out of that chair asap, its causing the choking and if he continues on he will end up with a curved spine.
So she rang our OT for us and sorted out getting him back into his squggles chair.
6mths on my sons shoulders have started to curve inwards, so i asked for a vest to help. The OT wants to push the bad chair again. I raised my concerns about the spine, but he said it would be more controlled this time. He also need a seat for when he goes to mainstream nursery in Sept, which he is fobbing me off. I am getting frustrated as he is not listening to what I say and doing what he thinks is best although he spends very little time with my son to really know whats going on.
He wants to do this therapy in school in the bad chair so I shall talk to them and say I'm not overly happy with it. His school do seem to listen to me.
I'm very rarely upset by my sons disability, but this has got to me. He is three!! He needs to enjoy nursery not be pushed and pushed and pushed. He does weekly physio, with daily stretches at home, wears splints full time and is learning to use a manual and electric wheelchair, is that not enough!
Also what effect is this going to have on his spine, it is me who will have to answer to him in years to come when the OT is long gone. Ultimatly I know him best and it is my responsibility.
What are your thoughts? Has anyone experienced anything like this? Can I get a second opinion from a different ot?
#2
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I dont have any experience of this as my daughters OT is fab and we've always trusted each others judgement etc ..... I wouldnt allow the chair you think caused him problems before, or if I did it would be very closely monitored!! what does the OT mean by more controlled this time? If you are really unhappy I would contact the head of the OT department to see about a second opinion.

As for doing therapy in school or nursery, that is normal, that is what happens they put a programme together and his TA will do it as often as the OT/physio say. My daughter has had OT, physio and Speech therapy as part of her school day since she started. She has time in her timetable for walking with a walker or going in a standing frame.

I completely understand the thought that he is only 3 and needs to enjoy nursery, I felt exactly the same with my now 11 year old and chose her resource nursery as it reminded me of the nursery she would have attended.

I have always thought she is a child first, disabled second but I often wonder now that if I had of done more, pushed more for different therapies, done it constantly etc would she be different now, would she have made more progress etc. I did what I was told to do but just wonder sometimes if I could have done more.

Good luck with the OT x
Proud mum of 3...... Dani,13, amazing child....Sofie,11, my smiler, physically disabled, 3 strokes aged 2, speech issues, learning difficulties, epilepsy.... and Luke,2, diagnosed with autism January 2011, non-verbal cheeky chappy.
#3
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Hi if your not happy about it then push that you wont be putting your son in to it . Your his mum and you know him best , i'm not sure what is meant about the chair sorry so cant say about it . Hope someone else can advise you on what is best for your son , stay strong xx
Single mum to a 14year old daughter and a son who is 3years old who has severe learning disability , hypotonia , hypermobility , visual impaired and sensory issues , he has showed me the meaning of life Heart and 3rd baby due 2nd of January 2012
#4
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Hi - I can't comment on the use of the chair but only on not being happy with a health pro that won't listen.

I guess because I'm what is classed as an 'older mum' I haven't stood for any health pro telling me I should be doing something that I don't agree with.

All I would say is go with your gut instinct. Like others have said - you know your son better than anyone else. If you're not happy you've got to be really firm and say so. No health pro can force you to accept something you don't want. I know they are trying to do their job to the best of their ability but I sometimes wonder if they work out the text book rather than treating an individual child, if you know what I mean.

Just be strong honey - you can always change your mind later about the chair in question. Why don't you ask if your son's favourite chair can be tried and tested first before moving into the one you don't like? That way you're offering to compromise and not refusing to go with what they suggest. Good luck. xx


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